Friday, 24 March 2017

Reflux Update

I haven't wrote about LL's reflux since last September, and so much has happened since then that I felt it was about time I wrote an update.  I think part of me has been putting off writing this post, because for me, reflux and our journey is such an emotive subject and one that is part of our everyday lives.  But here goes.  As an aside, if you're not at all interested in reflux, maybe click off now, and please come back next week when my other blogging topics will resume. 

Where to begin.  If you want to read my original reflux posts and follow our journey of infant reflux from the beginning, you can read them here, here and here.  In summary, LL was a very unsettled baby and I was basically sent away from the GP feeling that it was my fault.  Her pain, constant night waking and refusal to eat meant that we were finally referred to a paediatrician just before her first birthday and LL was commenced on oral ranitidine.  Her dosage was doubled, and it is here I pick up my tale. 

Doubling the ranitidine dosage did not ease LL's symptoms at all. Alongside the ranitidine, we had to try and encourage LL to eat, as at 10 months, she was not eating anything at all and only taking breast-milk. But LL just wasn't interested in food, and the very little tastes she had coincided with extreme pain at night and waking at least four times a night being inconsolable.  It was never the case that I could hold her and she would fall back to sleep, she would scream in our arms and back arch.  The only way to calm her was to let her breastfeed, but then she would settle and fall asleep, only to suddenly jolt awake again in pain. 

We were seen by the paediatrician again, and this time we were sent for bloods to rule out any underlying conditions or food intolerance's. Luckily all her results came back normal, but her pain still persisted and we still had a one year old who ate nothing.  And I have to say here, when I say nothing, I don't mean she picked at her food, or some days were better than others, I mean she ate no food whatsoever.  To me it felt like her early experiences of food were embedded with the pain of reflux.   

We were then commenced on omeprazole, and after some jiggling about with her doseage, the medication seemed to be doing something.  It certainly wasn't overnight, but instead very, very slowly.  Periods of night pain gradually starting to shorten, and they then became less frequent, to the point of only being once or twice a night.  Again, this took months, rather than days. 

The omeprazole was a bit of a pain to give as it came in a dispersible tablet form, we found the trick was to dissolve it and then mix it with a little apple puree and spoon feed it.  It also helped to give the medication at teatime, so it was effective during the night which seemed to be the worst time for LL. 

I wish I could write 'and then the reflux was never seen or heard of again', but it's a bit more complicated than that.  Whilst the omeprazole seems to have some effect on her reflux pain, diet and sleep seem to be the two areas that we now need to work on and which I think will take time to improve.   

As those of you that read my blog know, I'm awake with LL most nights and I knew that she would never suddenly become a good sleeper.  I don't think she knows how to be a good sleeper from her bad experience of sleep as a baby.  LL would never nap as a baby as it was just too uncomfortable for her to lay in her cot, so I often walked around with her in a baby carrier or pram.  To this day, she only takes a nap when I go out with the pram. Her sleep at night is still quite irregular, and we have good nights (only waking once) and bad nights (up to four times).  And things like teething or colds can really upset everything and flare her reflux up. 

Diet is still ongoing.  She will eat a few spoonfuls of cereal for breakfast and that is generally the biggest meal of her day.  Sometimes she might try a food, but more often than not she would rather go hungry. She has a total of four breastfeeds in 24 hours, and we hoped really reducing her breastfeeds would make her hungry and force her into eating, but this just hasn't been the case.  All the usual tricks to encourage eating haven't working, and as with the sleep, I think it will be a very slow process for her to learn about food and not associate it with pain. We are currently trying messy play sessions to see if that helps LL become more tactile and less sensitive to foods and to encourage her to play more with foodstuffs.  We've also started multivitamins to maintain her iron levels, as low iron levels can depress the appetite.   

And that's where we are at.  I can't believe what a long road it has been.  I'm fully aware that there are lots more worse things that could happen and we are very lucky to have such a beautiful and healthy baby, but at the same time it's been tough and some days, especially on very little sleep, it is still tough.  

I think I still carry alot of guilt around about LL's reflux, about how I should have done more from the start, especially with my knowledge of being a nurse and health visitor, and I often find myself second guessing myself if she is upset.  Is it the reflux? Is she tired? Is it teething? I find it really hard sometimes to figure out what is wrong, and sometimes I just don't know, and we have to ride it out. 

I'll be sure to update you again with how we get on trying to increase LL's food intake, and I hope at some point we no longer have to take the medication too.  If anyone is struggling out there with their baby's reflux, please know you are not alone.  For me, dealing with LL's reflux has been so difficult, especially not feeling heard and feeling that it was my fault for having an unsettled baby, or it was something I should 'just get on with'.  If you do have any questions or want to chat about reflux please feel free to drop me an email.  If just one parent finds some comfort or help from me sharing our experience, then this is completely worth it.  Thanks for reading. 

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